The calm before the storm

[Willowkins]

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

How is everyone this evening? We’ve had a lovely but busy weekend with DSS & his girlfriend staying. Much needed distraction. Reality starting to set back in now as DH has been asleep all afternoon / evening and I find it really lonely. I know he can’t help it & would give anything to change the situation but it is so hard being the one keeping everything going. Hope that doesn’t make me sound selfish.

Hope all okay (as can be!) with everyone.

Hello, I've followed this thread all year because one of my best friends had ovarian cancer. I never found myself able to post on here while she was alive, which is strange for me, but it gave me support reading.

@yolofish do you have any contact details for the colostomy bag charity? My husband ended up with one this year after a few bowel operations, and he has a lot of spare bags that didn't quite work for him. I'd love to pass them on.

hi honeyroar it's called Jacobs Well I think? I need to google and then donate, but we've just sent off a big box of bits DH can't use.

So sorry about your friend, I also lost one of my best friends to ovarian cancer. It's a bugger.

jacobswellappeal.org/

@Diangled - it's really hard keeping everything on an even keel, you need to look after yourself - remember the oxygen masks on a plane - you need to do you first so you can help the others. Easier said than done I know.
My DH sleeps lots, we are just used to it now, we know he has an afternoon nap most days and late nights are a thing of the past.

Thanks Yolofish, I will look into that. We seem to have loads kicking about, I'd love for them to go to use somewhere.

Hi y'all. Welcome to the newcomers and sorry you're here. Good people on this thread though.

I just wanted to mention Colostomy Friends of the Philippines (on Facebook). I donated MrW's stoma stuff to them - it's such a relief knowing it's going to a good cause instead of landfill.

Hi willowkins I hope you and the littles are doing as well as you can be... such a platitude, but I hope you know what I mean anyway.

DH now on cycle 3 of 8 of adjuvant chemo, and not been doing too well the last couple of days - very tired, feels 'off', bad tempered etc.

How's everyone else doing?

Hi willowkins I’ve read the entire thread. What a torrid & then sad time you’ve had. Sending very best wishes & thank you for encouraging the thread to continue.

yolo Sounds tough for your DH & of course you too. When DH had chemo last year his mood / positivity definitely improved once he was halfway through.

We are plodding on here. Big apt next week with scan results (we are expecting them to be bad after the last months drama) & next steps plan. It’ll be more bastarding chemo though I’m sure. Ah well it’s the weekend & it’s a busy one so lots of distractions. Hope everyone has as good a weekend as possible.

Lives a bit shite here, DH is sleeping loads and loads, can't function without an afternoon nap. Has had a bad headache for a couple of days. We mentioned the tiredness at his last appointment and all she suggested was reducing his meds - his ct scan can't come quick enough tbh.

Lazy weekend here, just pottering

notapizzaeater It’s so hard isn’t it when they’re so tired. How long till the CT scan? Do you keep the house quieter for him or carry on regardless? I find it really hard when DH is so sleepy as it makes it harder to ignore that he is unwell. DH has his recent results on Tuesday. I’m hoping he can reduce his steroids as I hate how they alter his mood. To be fair he hates it too but I’m biting my tongue a lot!

Thanks Willowkins for that info, I will have a look.

To everyone on here having to be strong, a huge hug and 💐💐. I've been reading back a while (hadn't been on for a while since my friend died) and you're all doing amazing. I know you have no choice, and it doesn't often feel like you are, but you really are.xx

@Diangled we carry on as normal. He feels bad enough as it is 😥

Ct appointment came in this mornings post, 2nd Jan - seems a long time away

We carry on as usual too, although with all comings & goings here it’s difficult to do anything else. The 2nd Jan does sound like a long time away, the waiting & wondering is so hard isn’t it?
We’ve actually had a lovely day today. DH took DS3 to the motorbike show in Birmingham & I took DS2 to his football tournament. DH asleep now with DS3 snuggled up to him & the knot of tension I’ve had all week is starting to ease. Helped by the I think !

thank you all for keeping this thread going. im finding it hard to contribute, but its such a comfort to know i am not alone

much love to you frik and of course all others... DH temper is so bad I had to resort to doing my accounts tonight!! but I know we are lucky, it could be so much worse, but I have a permanently bitten lip at the moment.

my lip bitten very hard tonight, DH thinks it's 'funny' to be pro Johnson during the tv debate, and kept coming out with complete crap designed to wind us all up. Luckily he went to bed at 9, and now I have wine. He is so bloody stroppy at the moment the DDs and I have resorted to making childish v signs behind his back. Sigh. I know chemo is no walk in the park, but ffs! sorry, rant over.

Rant away, we are all in the boat with you x

I'm another one constantly biting my lip.

I'm sure it would feel a bit better if I could sleep, being exhausted probably isn't helping my patience levels!

I've existed on 5 hours max sleep a night since DH got diagnosed ..... I need sleep 😥😥

Doesn't help the overall mood !

It’s very reassuring to know it’s not just me biting my lip! I’m also permanently knackered although I do have sleeping pills for when I’m past functioning.

DH had his results on Tuesday that shows his disease is rapidly progressing although it hasn’t gone to any organs. So back to chemo starting next week. 10 cycles this time 3 weeks apart each time. Have spoken to the DS’s which is never easy but they notice everything!
Sending best wishes, sleeping vibes & lips that don’t get too bitten to all.

Hope you are all doing ok.

Sorry to bring the mood down but We've had some shit news - DH has been forgetting things for a couple of weeks, silly things like passwords, what he had for tea etc so I rang the hospital yesterday and pushed. He's had an mri today and the doctor thinks she can see 4 brain mets - we will know more tomorrow when they get the radiography report and see where we go from here ......

oh nota sending you the biggest of hugs. What shit news...

Oh shit @notapizzaeater I’m so sorry to read this. It feels like a never ending nightmare doesn’t it.
Obviously hoping the news isn’t as bad as you fear tomorrow but if if is I hope you get a good plan. The waiting is akin to torture I find. I’m new to this thread I know but am happy to listen to you rant away at any time. Sending you very best wishes.

Been to the hospital today and had a ct scan - all going over to Leeds now and we will know what's happening next week - ie options etc.

He's devastated as he's had to give his driving licence up (and he has a kit car he's built over the last few years) 😥